Child, FSGS

If I were to find a theme woven into the story of my 11-year-old daughter, it would be “the presence of God.” Acacia’s story always has been, and continues to be, filled with sacred presence.

Acacia’s health and physical aptitude was exceptional since birth, and her love of food, particularly healthy and complex food, always made her a wonderful companion at the dinner table.  We were shocked when, in July 2013, Acacia presented with fatigue and stomach bloating. Then, suddenly, “puffiness” appeared in her eyelids, ankles and legs. An afternoon in the ER resulted in a week in the hospital, during which time she was diagnosed with Nephrotic Syndrome. And following a kidney biopsy, she was diagnosed with FSGS (collapsing variant). Suddenly, this extraordinarily active, fit, healthy 11-year-old was experiencing unexplained pain throughout her body. We simply could not manage the nephrotic symptoms.  

During Acacia’s time in the hospital, we were also made aware that she was positive for the Parvovirus B19. There is some research indicating that Parvo can trigger FSGS and, despite multiple IVIG treatments, she maintains the virus in her body.  Her nephrologist at DeVos Children’s Hospital in Michigan is hoping that if she can clear the virus, we might be more likely to achieve a state of remission.  

During October and November, Acacia spent one day a week in the hospital for a six-hour Albumin infusion, simply to make her body feel more comfortable — and she did have more energy for several days following the treatments.  

In regard to her Nephrotic Syndrome, albumin, creatinine and protein levels, various doses of Prednisone, and now a 4 mg twice-daily Prograf treatment do not seem to be moving us anywhere closer to remission.  Her levels are not becoming significantly worse. When friends and family ask how she is doing, my response is “Acacia is stable in an unpleasant and unpredictable place.”

When I consider the “presence of God” theme, I am overwhelmed by the spirit inside Acacia that is never missed by the doctors and other professionals who have joined us on this journey. Acacia’s energy for life and the joyful resilience that shines in her smile and in her eyes gives us wonderful hope that she will return to health. Even in the midst of adversity, she passionately embraces each step along our new path. We are filled with gratitude for the medical Staff at DeVos Children’s Hospital and for family and friends – new and old.